Telling others about the illness

People diagnosed with cancer may find it awkward, embarrassing or uncomfortable to tell family and friends what's happening to them. Most people we interviewed were deeply shocked when they received the diagnosis (see ‘Hearing the diagnosis and prognosis’) and some wanted time to absorb the news themselves before they told anyone else. Others delayed until they felt the time was right. For instance Helen did not tell her husband until he arrived home from work, or her son until he came home from university. However, Ben told his family immediately after he arrived home from the hospital as ‘it’s no use hiding something like that away’. Some people told their relatives face to face but others had to phone relatives who lived far away.

John is a retired pensions manager. He is married for the second time and has 2 adult children. Ethnic background' White English.

Given that you didn’t know for such a long time exactly what the problem was, how did you go about telling other people, for instance your son and daughter and other family members, about what was wrong with Ann?

I think, with great, besides with great difficulty, I think we kept, or I kept it sort of bottled up inside me for forty-eight hours or so before I talked to both my children. They both knew it was very serious because, you know, they had, they had been around and they, they had known the frequency with which we’d been into hospital and been for this and been for that. But again that was in September and I think I just, just talked to the pair of them, I think, I think with my son I had to do it on the telephone, but with my daughter, she lives locally so, you know, I could talk to my daughter. But my daughter is the more resilient one anyway so it was easy to talk to my daughter, less so with the son, because he was closer to his mum. And, you know, the fact that he was, he was up north didn’t, didn’t exactly make life, make life easy, because getting down here was always a bit of a pain.

view profile

Profile Info

Age at interview:

39

Sex:

Male

Background:

Simon is a teacher. He is a widower and has two children. Ethnic background/nationality' White British.

I think we both felt the sense of having a horrible secret. It felt to me like carrying a bomb. It felt to me like carrying a bomb that if I opened my mouth would pull the pin, you know. And it, it was, you know as though we were, as though I was sort of cradling this news.

Who did you feel you wanted to tell first?

Oh well I didn’t want to tell anyone. I mean I, it was a case of we were going to have to tell, my parents were here, they’d come to look after the children, while we went to the appointment. Or I think it was just my Mum actually and so we knew that we had to tell them, and Karen’s family. But it was a case of have, we had to, you know. We didn’t want to tell anyone. Because we knew how, we knew what a shock it was for us. Or this is how I felt at least that it was such a shock that I didn’t want to burden anyone with that.

And so we just went to, you know a field near here and sort of went for a walk. Just to try and well, you know you feel like you can’t feel your legs. You feel like you’re floating. We went to, we went to a pub, near there to, just to, for something to do, because you don’t know what to do with yourself. And we went to the bar and neither of us could talk. We, it was almost embarrassing. We went to the bar and the barman said you know, “Can I help you?” There was no-one else in there. And I suddenly thought, “I can’t think.” I couldn’t even; I didn’t even know what I wanted. I didn’t know what to say. I looked at Karen and she was, she just looked at me, and she was the same. And you know, and I had to sort of really force myself to sort of be able to be normal and order a drink. Phew. Its, it’s just, so... Eventually we had to come home, you know, there was no way, there was no way round it. I mean and gently I think, you know, just sort of said, “Well there is a growth.” And I think there were tears then and, but they, aah the, I think the children were in bed by then. It had been an afternoon consultation but of course we’d, we’d taken a few hours to get home. So the children weren’t there and yes it was, it was quite emotional then. I don’t think we talked about it being terminal at that point.

Most people said that family members had been shocked and upset, but had been very supportive. However, not everyone had support. Peter (Interview 13) had to cope with his illness without his wife’s support. A few people thought that relatives seemed to be ‘in denial’. Dorothy’s grown-up children helped her ‘make the best of the situation’. Once a stent had been fitted to relieve her symptoms she felt quite well. No other treatment was planned, so she and her children just ‘carried on as if nothing had happened’.

Audrey is a teacher, now retired. She is married and has 3 children. Ethnic background/nationality' White British.

How did your husband react to this news?

I think he was shocked, but took it, he’s very placid my husband is and he’s been very supportive and, but it’s been the children mostly, they’ve been absolutely wonderful, every important meeting we’ve had with consultant or surgeon they’ve been there, we’d go in and say, “Have you got plenty of seats, the gang are here?” you know, every time not one of them but the three children and my husband.

That’s wonderful.

Yes, he’s been really good and my friends have been fantastic as well, you know, to visit and helped out when I was home after the operation.

view profile

Profile Info

Age at interview:

62

Sex:

Male

Age at diagnosis:

62

Background:

Peter is a retired sheltered housing officer, he is married with two adult children. Ethnic background' White British.

So has your wife helped you at all with your illness? Has she been with you to hospital or anything like that?

No. In fact on a number of occasions when I’ve come back from seeing the specialist or whatever she hasn’t even asked me how it went. And she’s also now suffering from a degree of, well I wouldn’t like to label it as dementia because that would be a, a medical pronouncement, but certainly symptoms of, serious episodes of forgetfulness. Like, for example, if I’ve been to the hospital on a number of occasions she’ll refer to me having gone to college. “How did you get on at college?” would be one. And she may not even remember on, on some occasions that I’ve actually been there. She doesn’t even know where I’m going, where I’m coming today. Didn’t ask me about it. She said, when I got dressed up in a jacket and tie, she said, “Oh it must be something important”. But that was as far as it went.

So I take it she wasn’t even with you when you got your diagnosis?

No.

How did you go about telling her?

She wasn’t with me, not with me physically, all through, throughout the six weeks course of treatment that I had I went there on my own on every occasion. I did ask her once, I said, “Would you just like to come and see where I’m going and what goes on there?” And, but nothing happened. It didn’t happen.

So how did she react when you told her what was wrong with you?

Not sure that I can remember precisely. I think she may have been somewhat matter of fact about it. As I recall. She certainly didn’t burst into floods of tears, neither did she throw all her clothes off and go running round the garden naked whooping for joy, but no, I suppose, matter of fact is the best way I can think of it really.

Most people told their close family and friends about the diagnosis before spreading the word amongst friends and acquaintances. Lilian decided to make an announcement about her illness at a meeting of the Women’s Institute. She knew that she would have to give up her role as treasurer and she thought it would be better to tell people what had happened herself than to risk gossip and whispers. People found that other people knew even less about pancreatic cancer than they did, which was sometimes difficult.

Peter is a journalist. He is married and has two children. Ethnic background/nationality' White British.

What sort of reaction did you have from friends and colleagues when you said that you had cancer? This, this was the year 2000.

Mm. It was, one of the problems with the pancreas is that people, I mean journalists they don’t know a lot about anything, but they know a little about a lot of things, and so it was, was and still is quite difficult to get over the fact that I had a, was lucky to have a very rare kind of pancreatic cancer, or comparatively rare kind of pancreatic cancer whose prognosis although very bad in my case, because it had got so big, is not as fundamentally bad as other kinds of pancreatic cancer, or the main kinds of pancreatic cancer. And since neuroendocrine tumours were not well understood by anybody, well doctors hadn’t heard of them, you couldn’t really expect my colleagues to have done. So there was a certain amount of concern that I was underplaying this but, one, I was, I was able to persuade the people that mattered, the people that mattered to me about the, of the exact truth of as to what was going on, which was exactly as I’ve set it out to you as I, as I discovered it.

Most people’s friends had been very supportive too, especially if they had been through cancer themselves. Friends offered practical and emotional support. However, some friends found the subject embarrassing and had avoided them. Others recalled that friends had broken down when they heard the bad news and their negative or emotional reactions had been hard to cope with. In that situation the people we interviewed felt they had to support their friends, at a time when they needed the support themselves. Some commented that it could be harder for the ‘helpless onlooker’ to deal with the news than it was for the person who was ill. Sometimes other people’s reactions seemed more fitting for a death than for an illness.

Alison is married and has 2 children. She is a PhD student. Ethnic background/Nationality' White British.

I mean some people would not want to talk about it, be really practical, offer sort of, “What can we do? How can we help on a practical level?” and not want to discuss what’s been going on. Possibly because they didn’t want, didn’t know how to talk about it with you. Other people would, as I said before, would, would break down and, “I don’t know how you’re dealing with this” I found very difficult to take. And, you know, mostly though I found that people have been incredible, incredibly supportive, incredibly kind….. Yes, most people have been incredibly supportive, incredibly kind and ……Yes, I mean other people, I mean some people have been very practical with their help and don’t want to discuss it. I’ve had people even within the family who haven’t wanted to discuss any details. And that’s fine. But, on the whole most people have been incredibly supportive. A lot of them, especially friends of my own age, incredibly shocked. Most people expect you to have had breast cancer if you’re my age. So the pancreatic thing was just, “Where did that come from?” And they didn’t know an awful lot about it. And a few people, when I was diagnosed, looked it up on the Internet and they were very, very shocked at the statistics and, and were really fearing for, for me, though they didn’t say so at the time. No, they, they did.

view profile

Profile Info

Sex:

Male

Background:

Did you find it difficult telling other people about what had happened, or did your Mum find it difficult? What were other people’s reactions?

Well I do remember after the diagnosis, a lot of people were fantastic, and a lot of other people were meaning to be fantastic, but just struck the wrong tone. They would send pretty much, ‘In deepest sympathy’ cards or, ‘In Memoriam’ cards, you know, really gloomy sort of religious death cards, and they’d leave these messages on my Mum’s answer machine. Really such solemn, you know, “I’m so very sorry to hear…”, and they all took a little too much interest. It was like they were always calling, and in the end we called them ‘the ghouls’ because they just were sort of getting too much satisfaction out of, well not too much, but too much, you know, vicarious sort of fascination out of the drama.

view profile

Profile Info

Age at interview:

73

Sex:

Female

Age at diagnosis:

59

Background:

Elaine was a doctor before she retired. She is married and has 4 children. Ethnic background/nationality' White Welsh.

I found that with me and people who knew me, it was fine. You’d just talk about it naturally and fairly matter of factly. And it wasn’t a sort of big roller coaster for me. But I think for my husband, he found it very difficult because so many people avoided talking about it at all, would even scuttle away down corridors, or cross roads. And he found that very upsetting. In fact I think the whole business really was harder for the onlookers like husbands and children, husband and children than, than for me. Because I felt I had the job to do to get better. And I have to say that at no stage actually, apart from the little bit of nausea and getting over a big operation, did I feel ill. And the other thing that people used to say to me, “I’m sorry; I hear you’ve been ill.” And I’d sort of say rather, “Yes, you know, I haven’t been ill. I’ve just had a big operation and I’m over it. And, you know, we’ll see what, see what happens.” But I didn’t feel ill, as I think a lot of people do. I wasn’t in pain.

Rory and her husband kept friends informed about her progress by sending out regular updates by email. This helped - it meant that friends didn't have to keep ringing up; getting news in this way saved them embarrassment.

Telling others was especially difficult when the prognosis was bad or when doctors had found a recurrence. Lesley was with her brother-in-law when a doctor told her that her cancer had spread to her liver and there was nothing more he could do. Lesley didn't want to tell her partner immediately because he was waiting for some test results for prostate cancer, and she thought that if he knew she was going to die then he wouldn't bother to get his results, not caring if he lived or died. She told him two days later.

Lesley is a housewife. She is married and has 3 children. Ethnic background/Nationality' White British.

I was starting to come round and getting used to the idea. It wasn’t getting easier.

No.

But it was sort of settling in. But telling people was awful.

It sounds like you’re more caring about them, than you were worrying about yourself?

I suppose in a way I have. But I kept thinking well, at least this way I can say goodbye. You know I can make all, make all my goodbyes you know to everybody. Instead of getting hit by a bus and everybody’s going, “Who, who’s dead?” You know, “That was a shock.” You know? And I’ve got a chance to say goodbye to people in a way. And if I keep that in my head, it’s easier.

How long ago was, how long ago was all that? When were you [diagnosed]?

This was September.

Last year?

At the end of September last year yeah. When I got the result.

And then when did you tell your partner and your children.

Oh, I told, I couldn’t hang on any longer. So because it was the Tuesday that I’d got, sorry the Wednesday when I had got the results, I think, yes. And by Friday I couldn’t hang on any longer because we got into an argument over something. And he said “What’s wrong with you? What’s wrong with you?” And I said, “I can’t. Oh I’ve got to tell you,” and he said, “What?” At the time we were making the bed. I can remember I was making the bed. And he, he shouted at me, “What the hell is wrong with you? Come on what is it?” I said, “I can’t tell you.” He said, “You, what? What can’t you tell me?” I said, “Look,” I said, “You’ve got to make me a promise.” He said, “What, what promise?” I said, “Make me a promise now. You go and pick them results up next Wednesday.” He said, “What are you on about?” I said, “You’re going to pick them results up next Wednesday aren’t you?” He said, “Well yeah, why?” I said, “Do you promise you are going to go and get them results next Wednesday?”

That’s by himself?

Yes, for his prostate results. And he said, “Why, what’s up, what’s up?” He said, “Please tell me.” And that’s why I had to tell him. I’d seen my Mum fall apart, I’d seen my Dad fall apart – but he just went completely off his head.

That must’ve been awful for you?

He kept saying, because we were together years and years ago, and then we split up for a time. And for all the time that we were apart he said he used to sleep with an old jumper of mine.

So soppy he is.

You know the big tough guy, but he’s not. And he just completely fell apart.

Did you have anyone to help you? Anyone you could turn to?

No. And then he says, “But we’re not even married.” I said, “I know we’re not married.” He said, “Right we’ll get married.” Cos he, “Yeah, when we’ve got some money.” He said, “No, we’re going to have to get married, we have to get married”. I said, “Well yeah. We will, we will, we’ll get married.”

view profile

Profile Info

Age at interview:

62

Sex:

Female

Age at diagnosis:

62

Background:

Ann is married with 3 children. She was a GP for over 35 years til her retirement when she developed pancreatic cancer, co-founder of the charity that runs healthtalk.org inspired by her own experience of breast cancer, and Medical Director of the Oxford University Health Experiences Research Group. Ethnic background/Nationality' White British.

I mean it’s interesting. I got the diagnosis on a Thursday, and all the children were meant to be coming and were coming at the weekend for a so-called fun run. I’m not sure they saw it as a fun run, because they had to run 10 kilometres, but it’s become an annual event. And so I didn’t really tell anyone apart from my husband and one or two other very close friends before that, because I wanted to tell the children. And I didn’t tell them until after the fun run. And after lunch I said to my three, or the other, they’re all married and got, two of them have got children, I wanted to just have a word with them. And of course the minute I said something and we were going, trying to find a room in the house where there wasn’t another child, or grandchild, they knew something was up. And I found it really difficult. Because I think one of the things about getting ill again is you, you know, you feel a failure in a way. You feel, it’s not that I feel I didn’t think my cancer away enough, because I don’t go along with all that. But you do feel you’re putting on others something which is awful for them to bear if it’s your children. And you feel you’ve failed in some way. I suppose one of the things is one’s f-, for me one of the important things about family life has been to try and make them happy, my sort of Jewish guilt of wanting them to be all right. And somehow to be, you know, breast cancer, pancreatic cancer, recurrence of pancreatic cancer, you think, “Golly, you know, this is more than they should have to deal with, at this stage in their lives.” And so I felt terrible. But I, that bit was all right. I think it’s the realisation now, when one, talking to one on the phone or I, it suddenly catches me and catches them, that I feel, well, sad really, really sad, not depressed. And there is a big difference. Just really sad that I won’t see the grandchildren grow up.

view profile

Profile Info

Age at interview:

47

Sex:

Male

Age at diagnosis:

47

Background:

Steve is an office worker (retired due to ill health). He is married. Nationality/ethnic background' White British.

How have family members coped with this knowledge that they’re going to lose you one day?

Ah it’s hard I think.

Only talk about it if you want to?

Yes, I can’t speak for them, but it’s very hard to talk about such things with your mother, your sister, with your brother. But I think it’s helpful for me to be brutally honest. I’ve wanted to be honest with people from the beginning and tell them not, not wrap things up and try and use euphemisms or pretend that something’s not the way it is.

At each stage I’ve tried to explain things fully to them and said, “This could happen, or this could happen.” And at, of course at one point I had to say, “I went to see the surgeon today. I’m afraid he told me I’m going to die.”

And I found it helpful just to be honest and open with people so there aren’t any hidden agendas or people, you don’t have to pretend. It’s a lot easier I think that way. Mm.

Telling teenagers or younger children was the most difficult thing of all. Ben told his teenage children exactly what was happening. They knew that they could talk to his Macmillan nurse about his illness. When Alison was diagnosed with cancer she also felt that it was important to tell her children the truth. William’s nurses gave him some useful written information about how to talk to his teenage children. He told them that he was ill and needed surgery but he didn't tell them that his condition was ‘terminal’. He didn't want to be ‘brutal’ nor did he give them false hope. When Helen had a recurrence she told her 13-year-old son that she was having more treatment but she didn't tell him that the cancer was back. She wanted to give him information gradually. However, she was more honest with her 23-year-old.

Most people said that their teenage children were shocked and upset and cried when they first got bad news but then appeared to handle the situation really well. Lesley’s 11-year-old daughter looked at Riprap, a website for young people who have a parent with cancer.

Lesley is a housewife. She is married and has 3 children. Ethnic background/Nationality' White British.

And so because I’d told him I could finally tell my son, who was 19. So I got hold of him, and sat him down. I’d just made the bed and I sat him down on the bed and I told him. And he just sort of sat there and went, “Right okay.” I said, “Are you alright?” He went, “Yeah, fine. Can I go now?” I went, “Yeah, okay.” And he went in his bedroom. So he probably went off for a, you know a little cry really. But I think one of the worst was telling the youngest one.

Because she was, she was just coming up for 12. And, I was, “Oh this is going to be hard.”

Well my eldest daughter had, when I’d gone down the couple of days before, she said, “Right I’m coming down.” I said, “Okay.” She said, “I’m coming up for the weekend,” she said, “I’m booking some time off.” She said, “I’ll just tell them I’m not well, or if I can’t get any holidays.” I said, “No,” I said, “If…” She said, “No, no I want to come up, I’ll be up this weekend.” Because she’d just passed her driving test so she was made up. “No I’ll be there.” I said, “Okay.”

So she was there with me. In fact we were sat here. And I got them sat here, my eldest daughter sat at the end. And then I had to tell her.

That must’ve been awful?

Never again. It was really, really bad. I don’t, she was a lot better than my, than my fella.

She didn’t sort of fall apart.

Did the Macmillan nurse tell you where you could get any support for the children?

Well they gave me lots of leaflets and information on how to tell people, especially children. There’s even websites that children can go on, and it’s called Riprap or something.

They can go on there and put on their thoughts and how they’re feeling. Things like that. And, so I thought, right, well I’ll get her to look at that and things. She’s sort of sat here and I’ve got my arm around her, my other daughter’s got her arm round her, arm there, and she was fine, she was, she was really good with it. But I never want to do that again, tell a 12 year old. You know you’re going to pop your clogs like.

And has she used the website?

Yeah. Yeah she’s been on it a couple of times. But she’s like me, she just gets on with it now. I mean she even says things, like she’s got first dibs on this skirt I’ve got.

First what?

First dibs. She’s got the pick of this dress, this, she wants this skirt, when I go she’s, “Can I have that?”

Oh dear.

You know. It’s just the way we, we do it. She, you know because she wants this skirt. She absolutely loves it.

David (Interview 30) and Fiona’s sons were still at primary school when she was diagnosed with cancer. One day David was with their younger son and he told him about his Mum’s illness. At the same time Fiona talked to their elder son and told him what was happening.

David is a hydrologist (senior consultant). He is a widower and has two children. Ethnic background/Nationality' White British.

Well, we’ve got two children, both boys. They were both at primary school at the time. They obviously knew that Fiona was unwell. And you have a … you’ve got a lot of difficult things going on…..

And one of the difficult things is how you tell your children [crying].

Yes. … Did you have any help with that? Did anybody advise you?

No, because we dealt with it quite quickly. Dealt with it…. Both Fiona and myself were, we were both of the same mind etcetera. We didn’t want to, we didn’t want to hide things away. Neither of us thought that was the correct way of going about it.

But we wanted to … when we told the children we wanted it to be when we knew what it was. So rather than before the diagnosis, rather than saying, “Oh it might be this or it might be that”, which I think to a child would be quite scary, I think probably for children, knowing what it is that’s affecting their mother was what they needed to hear. So once the diagnosis was there, we did speak to them and we let them know that it was a cancer. I think because we weren’t exactly certain what type of cancer, we couldn’t put a … the pancreatic term to that. But we, we did tell them and it happened in a rather unplanned thought out way. And in fact I was with one of my sons, [name] who’s the younger one, and [our elder son] was with his mum. And we both talked about the issue and described the issue, without actually knowing the other one was doing the same at the other side. And I think it’s probably … well it’s almost a bigger issue to the parent when you do this because I think you have the feeling of the gianormity of what you’re saying, whereas the child is obviously concerned, worried about what’s going on….

But doesn’t fully understand or appreciate what you’re saying even though, I can talk for what I said. I said that it was very serious and this could be a very serious thing for his mum. And that there is a prospect that one outcome could be that she may die. So that’s a very difficult thing to go through.

But once it was done that’s, that, that side of what you’re going through is no longer an issue for you because you’ve done it. And there was you to concentrate on, the important things of what you’re going to do and, well going forward from there. And I think it’s … I, well looking back on it, I’m a bit upset at the moment but….

Would you like a break?

No it’s ok… I think it’s probably for us and I can’t speak for other people, it’s the right thing to have done. And I think for the boys and I’m saying us as in the family, the four of us, I think that was the right thing for the boys as well.

And how were the children when you told them about it?

They were upset…. I found with the children, I think children react probably in a different way possibly to adults. I think it hits them and goes hot and cold. They can be very upset one moment and then playing with their toys the next, which is quite surprising I think because for Fiona and myself we were, we were feeling like we had this huge pressure all the time with us.

Simon and Karen had very young children when Karen was diagnosed with cancer. The baby was only four months old and their little girl was three. The hospital gave them helpful information about how to talk to children. The Winston’s Wish charity websitewas useful too.

Simon is a teacher. He is a widower and has two children. Ethnic background/nationality' White British.

So what did you tell the children all this time?

They, our son was only four months old when she was diagnosed.

So he was largely unaware. My daughter was three. And we told her that it was called cancer. We told her that there was a lump in Mummy’s tummy. And that she was going to hospital to have medicine to try and take the lump away I think. You know we didn’t want to give it any funny names. This is where resources, such as well would I don’t know if I should mention names but a website, Winston’s Wish was useful. And also the hospital were good at giving literature as to you know some of the basics, and where to find information. And I thought it made sense to me that you shouldn’t make up strange names or analogies, or metaphors for this for a child, because that can actually end up you know sort of confusing things. So we just told her honestly.

And so she understood, you know the way children do. They, they, they take everything on you know as it is so she understood why Mummy was being sick. She understood why Mummy had to go to bed. She understood why she couldn’t go in and see her. One time or I think one or two times, she came in to see Karen in hospital because we didn’t want her to be scared. You know she knew that Mummy went there and that she came back different. So we wanted to take that fear away.

Grandchildren may also be involved. Ann didn't want her grandchildren to know about her poor prognosis months and months in advance of her death, but she did want them to be prepared for it. Several people said they encouraged young children to ask questions about the illness. Maureen answered all her grandchildren’s questions but did not give them too many details about her illness. She liked to keep things ‘simple but not secret’.